hospice?!?!

[homemademomma]

One of the moms in my ataxia telangiectasia support group told us that her doctor recommended that they apply for hospice care!!!! Now, I know that pediatric hospice care is different because you can continue life preserving treatments, but I was still floored (as was this mom). I guess I just always thought hospice was a short term thing. This mom's daughter is 10, and there is no reason to think she won't live a good while longer. I hate to be crude, but statistically she most likely has at least 5 more years. I just had no idea that hospice was even an option in this sort of situation. I could see how it would be really awesome and helpful though, to have a dedicated palliative care team. 

Does anyone have a child with a terminal diagnosis? Has this ever come up for you???

[4midablemama]

Hospice really doesn't have a set time limit; it's provided for as long as the patient and his/her family need it, for days, months or sometimes years. The qualification for hospice is a diagnosis of a terminal condition with a prognosis of 6 months or less, but as long as the condition remains terminal, the hospice can continue almost indefinitely. 

http://en.wikipedia.org/wiki/Hospice_care_in_the_United_States

[angelabarnes38]

Hospice can provide care for all kinds of terminally ill patients. It can be for short or long term duration. One of my friends who had a terminally ill son was given home hospice care. These professional caregivers offered palliative care – mainly treatment for pain and other symptoms like nausea, diarrhea, shortness of breath, etc. It’s an individualized treatment plan that also teaches family members at home to help care for their loved ones and anticipate the kind of changes that may occur as the illness progresses.

[RiverTam]

My husband is a hospice nurse. His longest term patient has been on hospice care for 34 months. His shortest term patient died the day after she was admitted to hospice.

The goal of hospice is to advocate for the patient during the dying process. They help keep the patient comfortable, and educate the family and the patient on the dying process, so there is less fear about what is happening.  They help the family find resources to support the patient and themselves. They work on solutions so that the patient can be kept comfortable at home for as long as possible; ideally, the patient dies at home if that is what the patient and family want.

In an institutional setting, the hospice nurse monitors the patient's status and works with the primary nurses to make sure that the patient is being kept comfortable and that the patient's wishes are being followed.

I don't know if a hospice agency would take a patient who was so far out from death. (5 years is a long time.)   A regular home  health agency might be a better option, until death is closer.